Tuesday, 31 March 2015

Thanks for coming to visit the latest instalment on tales from the land of Minimed 640G.For the observant ones amongst you you'll notice we've gone from Episode 4 to Episode 6 without number 5. Well 5 was a video blog only about CGM basics and can be found here. Worth watching, even if I do say so myself. This week I made a second attempt at going for a run whilst on video and this time I managed to not turn the cleverest bit of the pump off. So it worked. I was very fortunate that James from Open Adventure came along too and helped to keep me going and also do his Jeremy Paxman impression.So watch the video and then come back for some more thoughts.

That was an example of me using the pump in a way that's not ideal but proving to the extreme what the SmartGuard could do. For me running normally would involve a suspension of insulin before starting, some carbohydrates pre-run, a few sweets along the way and then some careful monitoring afterwards. The difference the 640G has made to my exercise is mostly in the post-run time. Previously I'd be concerned about a later drop in blood glucose level and this meant lots of extra testing and treatment. Now I'm more confident to leave the pump to do it's stuff as it will protect from the lows. From the exercise point of view I'm off to a Diabetes Sports Weekend in May when I hope to learn more about how to handle the pre and post run highs and lows.Hopefully you're enjoying my blog pieces on this piece of kit and I've been getting some very nice comments which I'm very grateful for. This week I hope to grab some photos of maybe even some video of the 640G in action while I'm attached to a thin wire on the side of a cliff. Follow this link to see what I mean. And yes, we are doing the extreme version. Why did I think this would be a good thing? I've no idea!And then next up I want to have a look at what the 640G offers when you strip away the CGM elements. As I've mentioned before full-time use won't be that common in the UK until it gets NICE approval and even then, will probably only be needs based. And I'm fairly certain I won't meet that criteria so it's time to open the wallet. Which in turn means if/when I get the 640G permanently I probably won't have 365/24/7 CGM usage. So how does it compare to the Veo and also to other pumps out there? As I've only used the Veo before I may need some assistance with the comparison. All volunteers with assistance are welcome!If you've got anything you want me to cover then either leave me a comment here, on the videos or via Twitter.Finally here's some more links to other great vlogs I've watched recently.Firstly there's John's tales of drunken adventures and occasional shirt removal. Shameless!Next up we have Laura answering questions from other people with diabetes about her 640G whilst simultaneously juggling degus!And lastly pop over to have a watch of Emma's fantastic video on her CGM kit bag. The obvious things are the best ones and I can't believe I'd never thought of using velcro. Genius! Well done Emma and it's a great video.Have a great week and see you soon!DavePS As a quick final note this blog's picture comes courtesy of my 24 hour CGM profile that is recording a maximum of 10.2 mmol/L (183 mg/dl) and a minimum of 4.1 mmol/L (73.8 mg/dl). This was almost identical to yesterday and they both rank up there with my best ever CGM 24hrs!

Wednesday, 18 March 2015

So these pages recently have been all about
pumping and more specifically the 640G. Whilst I know this interests many, I’m
keen to keep a more general feel to the blog now and again and a few hours last
night gives me the perfect chance to do this.

The event I attended at my local hospital
was about a proposed new diabetes centre for the surrounding area. The ‘Patient
Conversation’ was billed as an opportunity for patients to put across what the
team currently do well and what can be improved upon. Along with a few others
from a local diabetes group I attend, I went along to really try and make a
difference. This should be an opportunity for local diabetes care to step back
and look at everything they do to see what they do well, what they do badly and
what they don’t do at all.

Being the good boy scout that I am I made a
few notes beforehand and went along to see what was being proposed.

We were grouped into tables of roughly five
to eight and together we put our thoughts down on to paper and answered the
four questions of the night.The
questioning was good and open about what we’d like to see from the centre and
also what can be improved with current treatment.

Overall a common theme was coming through
the evening as we answered the questions and fed back table by table. The
healthcare professionals we meet with at every appointment are fantastic
(except Barney obviously!) and their hard work and dedication will be what
makes any new centre work even better. On the flip of this process and
organization needs improving along with taking this opportunity to make some
relatively simple changes to improve the lives of people with diabetes locally.

A simple example of what works well and
what doesn’t is getting to speak to the people you need to. On appointment day
it’s not unusual for me to see the consultant and also squeeze in a meeting
with the diabetes support nurse (DSN) and dietician at the same time. However
contacting someone when away from the hospital means leaving an answer-phone
message with the DSNs that will be listened to the same day (if Monday to
Friday 9am to 5pm) and you normally get a call back the same day or the next.
But when leaving the message you’ve no idea if or when you will get responded
too. Likewise email responses are, what’s the word, ah yes, intermittent. And out of
hours; you’re flying solo matey.

Obviously as this is the local NHS,
resource is always a constant issue and we were reminded during the night that
people are being stretched as far as they can. I fed back that I understood
this but this has to seen from the other direction. Whilst the HCP is running
around saying “I’m busy, I’m busy” I’m sat there waiting for an hour, looking
at my watch thinking of the work building up back at my office and watching the
emails come in that I need to deal with urgently but can’t because I’m sat on
an uncomfortable chair and don’t have a decent phone signal. Being a person
with diabetes takes time as I’ve touched on before and if I had a choice of
hobby, this wouldn’t be it!

Through the night some fantastic yet simple
ideas were coming out. For example, move the consultants desk to break down
that ‘headtecher’ style barrier to communication, put up a noticeboard with
posters of local support groups to enable peer to peer support, text alerts for
appointments, same day HbA1c tests where currently it takes a few, remote
appointments such as via Skype for those who find it hard to travel, a coffee
machine in the waiting area with diabetes literature (Balance etc) to generate
conversation etc.

I kept bringing up again and again the
subject of social media and peer support. It’s hard to judge but I got the
feeling the heads were being nodded but the historical fear of ‘nutters on the
net’ still exists. The presentations given at the recent Diabetes Professionals
Conference show that online support is a significant aid and encouragement to
better self-management and to ignore or dismiss it at the stage would be
foolish. I really do hope I’m wrong on how I think this will go. There were
enough people with diabetes in the room that were there because of meeting
others that showed if you can encourage it you will get a much higher
involvement and therefore far less ‘did not attends’ on the appointment list.
Paired with this I’m sure people in the room (including me) would be also
willing to help provide some simple pointers (such as Kev’s great leaflet) for
people to connect with other local, national and international people who
understand what they are feeling too. On a local level we NEED to engage with
those better. Some people don’t want to tweet, Facebook or blog. That’s fine.
But they must at least know that these avenues exist.

Throughout the meeting we were asked to
write our thoughts down and these would be taken away and fed into the decision
making process. This must be applauded as connecting at any level can only help
to make the proposed centre more successful going forward. Indeed some of the
ideas already on the slides pre-prepared for a summary at the end matched the
feedback we gave last night. This shows that the thinking is going in the right
direction. Great!

The key question now is what is going to
happen next? I have a very real fear that last night was an exercise in ticking
boxes and if the decision makers were asked in the future if they had consulted
they can say yes.

Some of things discussed don’t need a new
centre building; they just need the process tweaking. And by tweaking this
process it may help to ease the burden on the wonderful DSNs rather than adding
to it.

I hope with a passion that this is just the
start of the consultative process and as well as looking locally at what’s
desired they can look nationally at other diabetes centres to find best
practice and excellence in each strand of the diabetes journey.

This is the chance to redefine local
diabetes care for a generation. Let’s do it! Let’s do it together!

Sunday, 8 March 2015

Following last week's introduction to my 640G system that you can read and watch about here, this week saw me getting more used to it.

The big selling point for this new pump system is the Smart Guard insulin control function. You'll find more about it in the video below but in summary the pump predicts when you are going low and cuts the insulin supply and then restores it when you start to come back up again. It sounds pretty cool and for me it's been working really well in my first two weeks of usage.The second part of the video blog (or vlog as the kids call it) looks at the pricing of the Enlite sensors. Obviously this is entirely based on your location. So for me I'm considering the UK only where CGM use is normally not paid for by the NHS and therefore for continued use with a compatible pump I would need to buy the sensors. And yes, I did drag in a little helper as I needed some help with the maths :)

Disclaimer - please read!

I am not a medical professional in any way. Nothing on this site should be construed as medical advice. Your diabetes will vary. Contact your health care provider for specific questions and advice. Without sounding like a pharmaceutical company – do not change medication, dosage or philosophy without speaking to your DSN, doctor, consultant or witchdoctor.